Public and patient involvement in dementia research: Time to reflect?

Abstract

Public and patient involvement in research is a well-established requirement for applications to many grant-awarding bodies. Numerous models of consultation, collaboration and leadership have been developed to support all stages of research, from ideas development through to project execution and dissemination of findings. However, the interface between researchers and lay members is not always a happy one; scientific ‘fact’ may not square with lived experience; clinical researchers may regard their accumulated knowledge from working with many people with dementia and their families as ‘more valid’ than the individual experience(s) of a small number of public and patient involvement representatives; public and patient involvement members can fall victim to tokenism and manipulation. In this opinion piece, I consider the nature of representation in public and patient involvement in dementia research, and whether identifying disconfirmatory cases provides greater value than current consensus building approaches. I conclude by encouraging researchers to listen, reflect and embrace the opportunity to engage with alternative perspectives.